Experience of care of hospitalized newborns and young children and their parents: A scoping review

Introduction Several global initiatives put parent involvement at the forefront of enabling children’s well-being and development and to promote quality of care for newborns and hospitalized young children aged 0–24 months. Scanty evidence on mistreatment such as delays or neglect and poor pain management among newborns exists, with even less exploring the experience of their parents and their hospitalized young children. To address this gap, authors reviewed research on experience of care for hospitalized young children and their parents, and potential interventions that may promote positive experience of care. Methods A scoping review of English language articles, guidelines, and reports that addressed the experiences of care for newborns and sick young children 0–24 months in health facilities was conducted. Multiple databases: PubMed, PROSPERO, COCHRANE Library and Google Scholar were included and yielded 7,784 articles. Documents published between 2009 and November 2020, in English and with evidence on interventions that addressed family involvement and partnership in care for their sick children were included. Results The scoping review includes 68 documents across 31 countries after exclusion. Mistreatment of newborns comprises physical abuse, verbal abuse, stigma and discrimination, failure to meet professional standards, poor rapport between providers and patients, poor legal accountability, and poor bereavement and posthumous care. No literature was identified describing mistreatment of hospitalized children aged 60 days– 24 months. Key drivers of mistreatment include under-resourced health systems and poor provider attitudes. Positive experience of care was reported in contexts of good parent-provider communication. Three possible interventions on positive experience of care for hospitalized young children (0–24 months) emerged: 1) nurturing care; 2) family centered care and 3) provider and parental engagement. Communication and counseling, effective provider-parental engagement, and supportive work environments were associated with reduced anxiety and stress for parents and hospitalized young children. Few interventions focused on addressing providers’ underlying attitudes and biases that influence provider behaviors, and how they affect engaging with parents. Conclusion Limited evidence on manifestations of mistreatment, lack of respectful care, drivers of poor experience and interventions that may mitigate poor experience of care for hospitalized young children 0–24 months especially in low resource settings exists. Design and testing appropriate models that enhance socio-behavioral dimensions of care experience and promote provider-family engagement in hospitals are required.

Introduction children up to 24 months. There have been few concerted effort to identify or address manifestations of mistreatment of newborns and hospitalized young children [15]. Sacks found that mistreatment in newborns include failure to meet a professional standard of care, stigma and discrimination, and health system constraints, delays or neglect, non-consented, physical (poor pain management or rough handling and verbal abuse, lack of communication with parents' lack of legal accountability (recognition for the newborn as a person) and bereavement care [15]. Similarly, there is little evidence on interventions that may mitigate poor experience of care and promote positive care experiences among newborns and young children. As a result, appropriate models that enhance the socio-behavioral dimensions of care experience and promote family-engagement are limited in low income settings [16].
To fill this gap, the authors conducted a scoping review to map the research on experience of care and related interventions for young children from birth to 24 months and their parents in hospitalized and outpatient settings. The focus was on manifestations of mistreatment and their drivers during care for young children up to 24 months, positive and negative experiences of care and, potential interventions that reduce mistreatment, promote provider communication and family engagement in their children's care globally, including in low-and middle-income countries. Evidence from this scoping review alongside formative research in select hospitals in Kenya (not presented in this paper) will be used to identify a contextually relevant model to improve experience of care for parents and families seeking services for hospitalized newborns, infants and young children up to 24 months in a low-income setting. For the purpose of this paper, we use the term "young children" for those who are 0 to 24 months unless otherwise specified.

Methods
Scoping reviews map key concepts within a research area, the main sources and types of evidence available, and can be used for concurrent pragmatic aims, including summarizing and describing a particular concept (e.g. experience of care for young children and their parents or related-interventions), its characteristics, and identification of gaps and areas of future research and practice [17,18]. Given our study is embedded in a broader implementation science approach to inform the development of a theory of change framework, we applied a scoping review as a methodological approach to help the authors map and synthesize relevant studies on experience of care and mistreatment for sick young children 0-24 months, interventions on family involvement in caring for sick children. This approach was conducive to eliciting thematic gaps and programmatic recommendations for subsequent studies and interventions to improve experience of care, reduce mistreatment and encourage family engagement and involvement care of young sick children.

Search strategy
Our search strategy drew on guidance from the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) [19]. Five reviewers identified the purpose and research question and established a common understanding of relevant terminology to use, identify the core concepts in experience of care and mistreatment, and interventions involving families and parents in the care of sick young children. Three reviewers applied an iterative approach, characteristic of scoping reviews, to select relevant published and grey literature, formal reports, WHO guidelines, standards, and clinical protocols that addressed the experiences of care for newborns and sick young children 0-24 months in health facilities. English language articles, guidelines, and reports were identified by searching multiple databases: PubMed, PROSPERO, COCHRANE Library and Google Scholar. manifestations and types of mistreatment and positive experiences of newborns and sick young children, of family centered care (FCC), quality of care, intervention elements-including partners and funders. They reviewed the relevance and type of evidence and summarized these broad emerging themes to map out areas for future programmatic research.

General overview
The initial search in PubMed, PROSPERO, COCHRANE Library and Google Scholar yielded 7,784 results and after exclusions, 246 were retrieved as potentially eligible papers. Fig 2 illustrates the search strategy. After exclusions, 68 published papers, grey literature, guidelines and strategy documents aimed at defining normative practices among young children 0-24 months of age were included. The analysis synthesized findings from single-and multi-country studies conducted across 31 countries, including Global (n = 18); high income countries in Europe (n = 13), North America (n = 15) and Australia (n = 2); low-and middle-income countries (LMICs) in South America (n = 2); Asia (n = 6) and sub-Saharan Africa (n = 13). Many papers focused on newborns aged between 0-28 days including stillbirths, premature babies, and neonatal deaths (n = 42). The remaining literature centered on children 59 days and older (n = 26); of these, very few papers had evidence that was exclusive to young children up to 24 months old (n = 4). The remaining 19 (of the 26) addressed under five or pediatric care in older children but were retained as they met the other inclusion criteria and featured learnings on interventions around the 0-24-month age group.
The results from the scoping review are described under three main domains: 1) experience of care for hospitalized young children and their caregivers; 2) drivers of negative experience of care of hospitalized young children and their caregivers; and 3) interventions to promote positive experience of caregivers and their hospitalized young children. Where possible, each domain describes issues pertaining to hospitalized newborns and young infants (0-59 days) and infant/young child (60 days-24 months) separately. We found 15 articles on experience of care (Table 1), 11 on drivers of poor experience of care (Table 2), and 32 on interventions that may reduce negative experiences of care ( Table 3).

Experience of care for newborns and sick young children (0-24 months) and their caregivers
Negative experiences of care manifest in various forms and were described in eight studies ( Table 1). Mistreatment of newborns is described by Sacks [15] who expands on a typology for mistreatment during labour and delivery outlined by Bohren et al [10]. The resulting mistreatment categories include: physical abuse; verbal abuse; stigma and discrimination; failure to meet professional standards; poor rapport between providers and patients; and health system conditions and constraints; legal accountability and poor bereavement and posthumous care [15]. We were unable to find any papers with a specific study purpose of describing mistreatment of young children (60 days-24 months) who are hospitalized or receiving care at health facilities.
Negative provider attitudes manifest as unfriendly verbal expressions or lack of attendance to parents when they complain about care. This may lead to distrust in the health system and influence women's future care-seeking decisions for future childbirth at facilities, postnatal care, and accessing essential child health services [21]. Health systems constraints such as limited space for mothers' accommodation, noisy, brightly lit, and intimidating units or wards, without much privacy and strict visitation protocols result in long periods of separation between mothers and infants, which is shown to be common in the neonatal intensive care unit (NICU). This might be stressful and traumatic for the mother and newborn, as it hinders bonding and leads to long-term consequences for the mother-baby relationship and may also impede breastfeeding [22][23][24]. Other experiences described include unjustified lengthy admissions, over diagnosis of risk conditions (for example, predicting urinary tract infection in many infants while only a few actually have it), inappropriate use of drugs often with

PLOS ONE
Experience of care of newborns, children and their parents: A scoping review Authors describe that infant in the NICU may demonstrate a developmentally unexpected sensory stress response. Exposed to painful, repeated, and unpredictable medical procedures, and to physical pain or discomfort related to illness, these infants may not have consistent support from a parent or professional caregiver to provide a buffer to help them stay regulated and recover from these stresses. Parents also lack autonomy in making decision about care of their children.

Costello, A
Editorial review India 0-59 days Case studies of the effect of period of separation between mother and infant, in NICU, that might be traumatic to bonding, and longterm consequences for the motherbaby relationship. Full-term mothers more likely to follow a "Cooperative" dyadic pattern of interaction with the infant and demonstrate balanced representations of the infant. Preterm mothers with high posttraumatic stress symptoms were more likely to follow a "Controlling" dyadic pattern of interaction, with more distorted representations.

PLOS ONE
Experience of care of newborns, children and their parents: A scoping review Major deficiencies exist for ENC supplies and equipment, poor provider knowledge and performance of key routine ENC practices, particularly for immediate skin-to-skin contact and breastfeeding initiation. Of newborns who did not cry at birth, 89% either recovered on their own or through active steps taken by the provider through resuscitation but a third of providers were able to demonstrate ventilation skills correctly.
(Continued ) unnecessary intravenous or intramuscular treatments for both mothers and newborns in management of life-threatening complications, and disregard of women's right to information, privacy or confidentiality [23]. Negative experiences also occur as a result of poor provider communication with parents on caring for their hospitalized young children (n = 9). Studies show that women, were often poorly informed about clinical practices and procedures, lack autonomy to make treatment choices for their newborns; in cases of small and sick newborns, this can lead to emotional crises including maternal post-traumatic stress, anxiety and depression [16,23,[25][26][27]. Other studies show that limited communication between midwives and parents and families may be Grieving parents reported lack of continued care/support for despite sustained access to postnatal support (mental, social). Parents were particularly feeling a sense of loneliness in their experience of perinatal death-at hospital and socially (after) which compounded negative experience of loss of a child. This loss and difficulty was worse for parents who had no other children to distract them (a coping mechanism to process grief) 11 Baughcum AE, et al., 2020 Quantitative United States, Ohio 0-28 days To examine parents' perceptions of their infant's End of Life experience (e.g., symptom burden and suffering) and satisfaction with care in the NICU Mothers felt they did not fully understand the cause of death/medical aspects. They weren't completely satisfied with health staff assistance in EOI decision-making. They were also slightly less satisfied with overall care than fathers. Both parents had low satisfaction scores with their emotional needs being met.
https://doi.org/10.1371/journal.pone.0272912.t002 It opines that nurturing care starts before birth, when mothers and other caregivers can start talking and singing to the fetus. By the end of second trimester of pregnancy, the growing fetus can hear. And, from birth, the baby can recognize the mother's voice. Early bonding is facilitated by skin-to-skin contact, breastfeeding and the presence of a companion to support the mother. These also build the foundations for optimal nutrition, quality interactions and care thereafter.

Britto PR et al., 2017
Global A review 0-60 months Nurturing care: promoting early childhood development.
To provide a comprehensive analysis of early childhood development interventions across the five sectors of health, nutrition, education, child protection, and social protection. One of the interventions reviewed is nurturing care.  Aspects of FCC namely dignity and respect, information sharing collaboration and participation are described.
Healthcare providers partner with families as they share the same goals: safe, high quality, and satisfying care with the best possible outcomes.
Partnerships with families is about how to put families first, not only with individual healthcare providers, but also within healthcare organizations.  Family benefits of FCR included increased understanding of information and confidence in the medical team, as well as reduced parental anxiety.
(Continued )  No changes were found between before and after intervention on assessments of caregiver wellbeing. However, mothers in the postintervention phase rated nurses as more supportive; mother-child interaction during feeding was more relaxed and engaged, and babies were less socially withdrawn. While the intervention proved useful in improving certain outcomes for children and their caregivers, it did not address challenging hospital and ward administration, or support needed by caregivers at home following discharge.
(Continued ) ii)An electronic survey was distributed to staff in the CICU with 2 primary question "how useful they think the tool is for care of the patient" and "how useful they think the tool is for the family?" and staff perceptions of a visual tool The Care Partnership Pyramid was printed, laminated and hung on the welcome board on the bedside for use by the family and care team. Families were oriented to the tool upon admission. Three "Plan-Do-Study-Act" (PDSA) cycles tested the impact of the intervention on parent partnership in care After 3 cycles of the "Plan-Do-Study-Act"-parents were more often observed participating in rounds, asking appropriate questions, providing emotional comfort, assisting with daily care routines, and changing diapers. Staff perceived that the tool was generally useful for the patient and the family but was sometimes overlooked or not used. Use of a bedside visual tool may lead to increased parent partnership in care for infants after cardiac surgery (Continued )  due to a provider's heavy workload [28,29]. One study suggests that parents who experienced a stillbirth felt ignored by providers' and perceived providers' inattentiveness as "normal but troubling" while providers describe this as a "coping strategy" to avoid difficult conversations with parents [30]. In another study, providers had difficulty integrating parents of babies with congenital anomalies in nursing care activities [31]. Elsewhere both provider and parents' interventions reviewed contained information about parent-led pain management strategies for infants in the neonatal intensive care unit (n = 4), full term (n = 4), or both (n = 1). Despite being an area of high concern for parents of newborns, few studies addressed parent-targeted education regarding infant pain.

Treyvoud K, et al. 2019
Global A review 0-28 Days Parents support in NICU Reviews the effectiveness of interventions for infants and children born preterm Reviews found that the interventions included parents' peer-to-peer support between parents such as face-to-face meetings, phone, group, and online communication forums for distressed parents and training NICU providers on mental health A multilayered approach to supporting parents of infants born preterm in the NICU is recommended, with evidence specifically for including layers of individual psychological and psychosocial support, peer-topeer support, and family centered care. perspectives were identified. One study showed parents perceived providers as being rude or withholding information or not listening to mothers; non-consented care; speaking loudly about baby's condition without consideration for privacy and confidentiality. On the other hand providers' described mothers not following instructions (not washing hands prior to entering neonatal unit); giving incorrect or misleading information "lying about the condition" to have their baby discharged sooner [32]. Positive experiences of care, across (n = 12) studies, were reported where parents were able to express their opinions' on care given to their newborns and when there was good communication between providers and parents [22,26,33,34]. Positive interactions were evident when parents are taught basic nursing skills such as feeding, cleaning, clothing and monitoring their newborn,. [22,27,35]; and where care plans and clinical decisions (particularly low risk ones) are made jointly by parents and providers, and consider the context of the family and community [35]. Positive experience was also reported if parents were allowed to provide comfort to their newborn and assist with daily routine care in an encouraging and enabling environment [36,37]. Processes that support mothers and fathers to learn how to care for their premature babies while still in hospital in readiness for caring for their babies at home was described as a positive experience of care. This helped parents overcome their fears and insecurities, strengthen mother-infant bonds, and made them feel empowered to participate actively, in the care of their babies and increased confidence of caregiving at discharge [32,34]. Positive experiences of parents, including providers responding to their needs and rights, was also instrumental in improving a child's ability to thrive. For hospitals with limited resources, having parents perform some tasks such as tube feeding helped to address staff shortages in nurseries, and functioned as a short-term economic savings to the facilities [22]. Positive experiences were also reported where parents with sick newborns in NICU were helped to meet their emotional support needs and information on care through parents support groups [38]. There were no specific studies examining experience of care among young children beyond 59 days.

Drivers of negative experience of care
Twelve studies describe the various factors influencing or "driving" negative experiences of care within health systems and among communities, and from individual providers.
Under-resourced health systems, and specifically at facility level, contribute to drivers of patient mistreatment. Often due to weak infrastructure and limited equipment, including lack of such basic elements such as running water, crowded units with limited bed capacity (where newborns are often sharing incubators or cots), noisiness, lack of privacy, lack of life saving commodities and facility policies, poor adherence to policies and guidelines and poorly trained staff are especially acute factors.
In a multi-country study, readiness for skin-to-skin implementation in newborn units was extremely rare [39], and failures in meeting standards of care and professional conduct, examples, patient neglect, poor staff accountability, non-consented care, and poor bereavement care all contribute to mistreatment of newborns [15,30]. A study in Southwest Spain and another in United States, found that lack of continued care/support (mental, social) for grieving parents who had experienced a stillbirth or neonatal death led to feelings loneliness, and a lack of understanding and satisfaction with end-of-life care provided [40,41]. While provider attitudes and norms appear to influence behaviors that can be described as mistreatment, or produce negative experiences for parents or young children, no studies focused on examining these factors. Poor experiences of patient care may also result from socio-cultural factors and community norms for the care of newborns and young children. In some LMICs, both provider and familial neglect of newborns and young infants at a facility may derive from societal non-recognition of newborns as full "human beings" [42] or prioritizing a mother's needs over newborns and lack of access to health care [43]. Practices such as delayed initiation of breastfeeding due to perceived lack of milk, or because a baby "needs to sleep" after delivery, or does not show outward signs of hunger, are examples of socio-cultural factors [43][44][45]. A multi country review found that health workers who lack knowledge and training on the importance of early and timely breast expression do not support and educate the mother on it [20]. A study in Gujarat, India found that skin-to-skin care was not practiced in most cases regardless of place of delivery, and immediate breastfeeding was not practiced in almost 63 percent of all deliveries, because most mothers believed colostrum digestion is difficult for newborns, or because the infant is kept from the mother after birth [46]. Data from Ghana and Ethiopia show that cultural norms such as early bathing can be prevalent even in facilities [20]. Another study in Ethiopia reported practices of bathing the newborn during the first 24 hours of life (75%), application of butter and other substances to the cord (20%) and discarding colostrum milk (44.5%)-all three contrary to WHO recommendations [47].

Interventions to improve positive experience and emotional needs of parents with sick young children
This scoping review found 40 studies of interventions that may improve experiences of care, reduce mistreatment, or improve provider and parent communication and partnership whereby parents are central to caregiving. Of these, 14 were review articles, three were randomized control trials three pilot interventions, one was an implementation study, and two were evaluations.
In this review we refer to the WHO's Nurturing Care Framework [6], as it provides global guidelines on important strategies for access, provision, and more explicitly, experience of care that place parents, providers, managers and policymakers as central to quality services.
The interventions discussed in this review are not mutually exclusive but focus on encouraging positive interactions between providers and parents. Some interventions emphasize the use, adaptation, or development of policy guidance, care protocols and job aids, parental or provider trainings, and use of technology to support an implementation. Nurturing care emerged as an approach that enhance physical, emotional and cognitive development. To effectively implement nurturing care three main interventions that can enhance nurturing care emerge from this review that may improve the experiences of care for newborns and young children: nurturing care, family-centered care, strategies to enhance parental/family engagement which all underscores provider communication and counseling skills.
a. Nurturing care approaches. Three studies; all of which are global reviews and one WHO framework describe approaches to ensure nurturing care. Nurturing care is defined by Britto et al. as "a stable environment that is sensitive to children's health and nutritional needs, with protection from threats, opportunities for early learning, and interactions that are responsive, emotionally supportive, and developmentally stimulating" [48]. Interventions encompassing nurturing care have been predominantly in high income countries, throughout the life continuum, starting in pregnancy with education and counseling, continuing through childbirth, the newborn period, infancy, and early childhood. Elements of a nurturing care approach might ensure, for example, skin-to-skin care for small and sick newborns, optimal nutrition (i.e. breastmilk feeding and exclusive breastfeeding, infant and young child feeding), and protection and promotion of sleep. Other elements of nurturing care include reducing stress and pain, supportive positioning, sensory environment, stimulation, and interaction.
In the long term, nurturing care promotes a child's physical and cognitive development, reduces morbidities and mortalities, and prevents disability injuries and deaths [6,16,20,48].
Nurturing care provides neuroprotection in NICU as well as enhances parental ability to read and understand the behavior of the immature infant, and to support the responsive parent and infant bond. Despite its small and sick newborn focus, nurturing care elements such as adequate rest, reduced sensitivity and motor activity (adequate play, quite/calm environment) are appropriate for older infants and young children who are unable to articulate their needs (up to 24 months of age).
This review shows that nurturing care during management of pre-term births and those born with complications is associated with outcomes such as early bonding, facilitated by skinto-skin contact, and early initiation of breastfeeding, facilitated by a companion to support the new mother [6,20]. Other benefits include reducing pain immediately after a procedure through touch or massage, non-nutritive sucking, and a calm environment, with reduced noise and light levels in the NICU are associated with reducing stress. Additionally, skin to skin contact 30 minutes before a painful procedure and sweet tasting solutions, swaddling/ facilitated tucking, or a combination of facilitated tucking with nonnutritive sucking are effective in reducing immediate pain and distress in inpatient preterm newborns [20]. Nurturing care is also associated with improved infant medical outcomes, staff and family satisfaction, and decreased NICU lengths of stay and hospital costs [16]. Implementation of nurturing care may include establishing teams in newborn units, training through e-Learning, didactic education, interactive workshops, physician sessions, and in-unit consultation to all individuals who care for premature infants in a NICU [6,16,20]. Elements of nurturing care and protection can be combined with other existing child health interventions that offer parenting support and skills development [48].
b. Family centered care. Family-centered care (FCC), described in 14 studies, places parents, families and caregivers at the center of newborn and young childcare. Family centered care is an approach to care delivery that promotes a mutually beneficial partnership among parents, families and healthcare providers to support health-care planning, delivery and evaluation. The principles of family-centered care include: dignity and respect; information sharing; participation; and collaboration [49]. This model resulted from increased recognition of the importance of meeting young children's psycho-social and developmental needs, which include the influence of their families on their wellbeing [25]. FCC enhances nurturing care and is mainly described as working with parents of small and sick newborns, premature infants, and young children requiring long term hospitalization, or those with chronic illness, but is also applicable to older infants and young children.
FCC involves time-sensitive dual communication between parents and multi-disciplinary team members who coordinate care transition through emotional, educational, medical, and home visit support for families. FCC is also an approach that promotes mutual benefit among parents, their families and providers through dignity and respect; information sharing; participation; and collaboration [50]. Implementation of FCC requires some parental literacy, and willingness of parents and providers to work together and spend time in NICU or pediatric units. The model presumes providers are able to coach and educate families on specific tasks, including taking temperature, weighing, nasal gastric tube feeding, Kangaroo Mother Care (KMC), breastfeeding, hygiene, and interaction with their children including neurodevelopmental care, responsive care, among others [51].
FCC promotes a healing and nurturing environment that fosters care and protection for better linguistic, cognitive, motor, social, and emotional development, and improved psychosocial outcomes of young children under five years of age. FCC depends on providers' knowledge and abilities to apply FCC core concepts during their interactions with parents. A randomised controlled trial evaluating FCC of sick newborns admitted in a NICU showed that babies of mothers or families trained and involved in FCC showed lower rates of nosocomial infections than a control group (not trained in FCC) though not significant [52]. FCC improved infant weight gain, decreased parent stress and anxiety, and increased high frequency exclusive breastfeeding upon discharge from a NICU [53].
Studies show that family members report satisfaction with their health care experiences involving FCC due to the transparency of care, allowing parents to be at the infant's bedside [54], and providers demonstrating respect by listening to and honoring family perspectives and choices [20,55]. FCC offers effective psycho-social support to parents of children in the NICU by identifying parents' concerns and stressors for their infants' care and developing individualized pre-and post-discharge plans [50]. FCC increases parental presence, improves physical and mental development growth, and prevents abuse and neglect of infants [56]. Implementing FCC necessitates training both for providers and parents [20,48,57], and often FCC interventions are focused on clinical aspects such as parents counseling on care and their participation in clinical rounds with less attention on provider introspection of their own attitudes or biases towards parents. An inter-professional approach to FCC was found to be useful in developing practical skills such as ways of working with and engaging families, increased reciprocity in therapeutic relationship, but it did not appear to change provider attitudes toward families [40].
c. Parental/family engagement. Eight (n = 13) studies describe parental engagement as a promising strategy to enhance effective parent and provider communication for meaningful participation in their hospitalized child's care. WHO's Framework for Improving the Quality of Pediatric Care recommends effective provider and parent communication and meaningful parental participation [5]. Parent engagement refers to the presence and participation of a parent (maternal or paternal) during infant care such as in comforting their infants and performing some specific care aspects [58]. While family engagement also known as family integrated care (with trained parents as mentors to other parents and family members) is a set of activities that grounds childcare in a supportive relationships and environment at the facility and home [55]. Carman et al. describes a family engagement framework of three levels, namely direct care, organizational design and governance, and policy. Each level along the continuum of care mandates consultation, involvement, partnership, and sharing of leadership [59].
Models, which educate health providers on how to communicate and provide end-of-life care, are particularly beneficial in dealing with bereavement or events after the death of a child [6,16,55,60]. Parent engagement models include unplanned and informal delegation of care to parents, as well as sufficient parental training and parents' willingness to participate in the care of their sick children [61][62][63]. In very sick newborns and young children it helps support parents during a difficult period. In addition to empathetic care, providers or social-workers encouraged ritual and grieving processes such as sufficient time to 'say good-bye' to an infant, keeping a memento, or offering space for parental expression of and communication around grief in the hospital setting were found to be helpful [40,41]. Studies on bereavement support suggest a need for providers to be flexible in their approach to meet parental variability and cultural nuances around losing a child.
Family and parental engagement has also been associated with greater acceptability of exclusive breastfeeding, immediate breastfeeding after birth, and skin-to-skin care and infant warmth. Parental engagement also enhances families' involvement in decisions, when parents are well-informed of what is expected of them for the care of their children in newborn units [64]. The element of peer-to-peer support provides physical caregiver wellness such as sleeping and sitting spaces and a room for procedures co-led by parents [57,65,66].). Parental engagement in high-income settings has been facilitated through active use of visual tools and mapping activities during a young child's hospital stay [36,67]. Provider behaviour change and their mindset is critical in seeing parents as primary caregivers and influences how FCC is practiced [68] though adaptions to LMICs and more socio-cultural contexts is needed.
One challenge to parental engagement strategies is the power imbalances between parents, families and their clinicians, with providers' values and preferences potentially hindering consideration of families in decisions during care [69]. A study in Kenya found that 8% of women reported being separated from their newborns at the facility after delivery, of whom 80% were separated for more than 10 minutes. Just under half (45%) felt separation was unnecessary while 60% reported consent was not obtained prior to procedures conducted on their newborn [70]. This limited parent engagement in breastfeeding and satisfaction [70] The values and attitudes of providers within parental engagement strategies are not sufficiently considered in the interventions described.
d. Provider communication and counselling. Central to nurturing care, family centered care and family/ parental engagement as well as other child health interventions is the quality of provider communication and counselling. Several studies (n = 13) focused on strategies to improve communication between providers and parents. Effective communication between providers and parents is integral to improve health care, reduce medical errors, and better health care seeking. Parents play unique and integral roles in judging their child's symptoms, and they need to be given information on care during their child's hospital stay to ensure adequate care and follow up at home [6].
A global systematic review found that parental capacity, confidence, and communication with providers is key for joint decisions for pre-term and acutely ill infants as they transition within or between health care settings [71]. Few studies, that do so examine shared decision making in a pediatric care setting especially for newborns and acute situations, e.g., treatment decisions for high-risk newborns and end of life [72] and targeted parent education and involvement on infants pain management [73]. In Malawi, parents with inadequate and inconsistent information of when their newborns were on bubble continuous positive airway pressure (CPAP) devices were more anxious and fearful [74]. For older children, a study in Norway, found that joint decision-making increases parents' sense of security and control of their child's health care [75]. A study of engaging men during pregnancy, childbirth, and infancy found that enhanced communication increased couples' joint decisions-making, leading to responsive care seeking behavior and home care practices [76]. A study in Kenya found that, parents informed early of their infant's HIV diagnosis resulted in a feeling of less stigmatization from providers [77].
A pediatric unit study found that although a structured communication intervention for families and providers did not change, the overall rate of medical errors (per 1,000 patient days) such as administering penicillin to a patient with a known penicillin allergy, harmful errors (preventable adverse events) such as delay in treatment or skin breakdown from oxygen tubing decreased significantly, by 38 percent post-intervention [78]. A review found that psychological and psychosocial support can improve communication with parents. This includes peer-to-peer support between parents such as face-to-face meetings, phone, group, and online communication forums for distressed parents and training NICU providers on mental health [79].
A study in Brazil and a systematic review conducted in the United States found that involving parents during medical ward rounds, in discussions with clinicians about their sick children's care, was instrumental in improving communication and understanding of information -and confidence in the medical team [35,80]. Parents who reported better communication were more likely to return to the facility, while poor provider communication was associated with lower satisfaction of services received [81]. In an intervention where providers observed and provided feedback to parents, enhanced care practices of parents led to their young children's survival, healthy growth, and physical, intellectual, language and emotional development [82].
Most interventions on communication counselling centered around information-sharing and provider development of parental capacities for specific skills through routine clinical counseling, observation and recommendations for care practices, and use of technology to promote follow up. A meta review observed that health workers should receive training in communication skills during their pre-and in-service health education. Implementation of most parent-targeted interventions emphasize regular interpersonal communication between parents and providers, with respect, confidentiality, comfort and support during care, engaging clients in care decisions, with continuity of care and audit and client response mechanisms [83].
A study in the Middle East on implementation of the Integrated Management of Newborn and Child Initiative (IMNCI) for children under five years of age found that, although clinician competency improved for assessing, classifying, and treating illnesses according to IMNCI guidelines, transferring complementary skills to parents required more attention [84]. Inadequate provider capacity could lead to inconsistent advice, misinformation, negative attitudes. This coupled with lack of time, and poor hospital policies may create barriers to successful implementation of the baby friendly breastfeeding initiative [24]. While training of providers is recognized as fundamental, few interventions emphasized provider attitudes and behavioral aspects that may affect their communication with parents.

Discussion
This scoping review describes literature on experience of care for sick young children (24 months of age and younger) and the experiences of their parents or caregivers, the factors driving negative experience of care, and interventions to improve these experiences and address the emotional needs of parents with sick young children. The 68 published and grey literature documents assessed from the last 10 years reveal that findings on mistreatment of young children, positive experiences, and interventions in a hospital setting emerged primarily from Asia, Europe, or North America, while most literature on the drivers of mistreatment is from sub-Saharan Africa. Overall, the literature on experiences of care is limited; there is little on mistreatment of newborns and young children (particularly infants and young children of ages 60 days to 24 months) and even less on how to mitigate mistreatment broadly. Interventions to improve the experience of care-nurturing care, FCC, parental engagement, and provider communication-are generally implemented in high income settings, with a paucity of evidence on how such models can be implemented in low income settings, with a focus on small and sick newborns and young children with chronic illnesses or conditions. Existing models do not sufficiently distinguish how provider norms and attitudes toward parents affect their interactions and behaviors.

Experience of care for sick young children
All children have a right to respectful and adequate health care that considers their behavioral and developmental needs, and is sensitive to the emotional and psychological needs of their caregivers [85][86][87][88]. Authors identified three sets of negative experiences: mistreatment of newborns; poor provider communication and its effect on parents and their children; and the negative effects of newborn and young child separation from their parents or families while in hospital. Most of these studies were in the United States and Europe.

Drivers of negative care experience of care
This scoping review shows that the drivers of negative experience of care are well documented, especially for newborns (n = 10), but little evidence exists for young children up to 24 months (n = 1). Factors driving inadequate provider care include inadequate knowledge, poor communication and interaction with parents, and poor personal and professional attitudes. Factors affecting care at facilities include high workloads with inadequate staffing, commodities, equipment, and general infrastructure. These factors are well described in high income countries, but there is little recorded evidence on negative experiences of care especially in sub-Saharan Africa [89][90][91].

Interventions to improve positive experience
This review reveals a wide range of interventions (n = 32) for improving quality of care, especially those involving families. These strategies are mainly articulated for small and sick newborns and premature infants including children with long term or chronic illnesses, with limited evidence on older children ages 60 days to 24 months.
This scoping review identified three inter-related frameworks that have been introduced in high income countries: 1) Family-Centered Care (FCC), 2) Family and Parent Engagement, and 3) Nurturing Care. The three frameworks put the child's family at the center of childcare during hospitalization. Each emphasizes family education, coaching, and full partnership with health care providers for a child's care, which is found to improve understanding and adherence to plan of care in addition to follow up care at home, resulting in better newborn and child health outcomes. Supporting parents psychosocially while at the hospital and continually once back in society-particularly in cases of perinatal loss remains an area for future adaptation and refinement. Good provider communication and counseling also enhance the experience of care with improved mutual understanding of care measures and enhanced respect among caregivers, families, and providers.
Factors that influence family engagement include beliefs about the family/of child's role, health literacy and education, organizational culture, societal norms, policy, practice and regulation [59]. WHO standards for improving the quality of care for small and sick newborns in health facilities recommends adequate providers and capacity building of existing newborn management including nurturing care for sick newborn and their families through orientation programmes, continuing education, skills training, quality improvement initiatives and support to maintain and increase competence [92]. But there is minimal evidence on child health policies and protocols that guide implementation of these frameworks and interventions in resource-constrained settings. We also noted inadequate focus on provider norms, attitudes, and biases that may affect the quality of their communication and engagement with parents. Our results show that parental and provider knowledge, along with protocols and job aids and visual tools can positively or negatively influence the degree of willingness to engage in strategies for enhanced care for newborns and young children including for a critically ill infant. [36,[93][94][95][96][97].
Several studies show that a conducive policy environment, facility preparedness, and improved provider and parental knowledge play critical roles in successful implementation of health care interventions [93,94,96,98]. One area of evidence that apparently mitigates poor experiences of care is the promotion of shared decisions by parents and providers in children's care a key element of family centered care and parent engagement. While we did not include this in our search terms, a 2019 systematic review of "barriers to shared decision-making between parents and providers" identified that the type of decision, poor quality information, a caregiver's emotional state, relative power relations, and inadequate time are key issues that need to be addressed [99].

Strengths and limitations
This scoping review adds to the existing body of evidence on experience of care and the factors that drive mistreatment of newborn and young children up to 24 months of age. It also describes promising intervention models to improve the experience of care and reduce mistreatment. The process of interpreting evidence from the interventions in this review was complicated since many studies did not consistently nor adequately measure outcomes. Although the authors conducted an extensive in-depth literature review, it is possible not all available literature was identified, as only those studies published in English and within the last 10 years were included. Moreover, similar to other scoping reviews and in line with the debate around quality assessment constraints, the study did not assess quality of evidence to the extent possible in a in a systematic review with tighter criteria and sufficient research in the topic area [18,100]. Despite these limitations, including the expanding and varied definitions of the methodological approach, this scoping review suggests a range of models that could be adapted and integrated within programs and policies for improving hospital-based experiences of care for newborns and young children as well as their parents; and can be introduced and piloted in low income settings.
This scoping review will be used in two ways: 1) with formative research in select hospitals in Kenya for developing a contextually-relevant model to improve experience of care for parents and families seeking services for sick young children up to 24 months in a low income setting, and 2) to develop and test a provider behavior change approach to enhance provider and parent communication and engagement for the promotion of respectful, nurturing and health system responsive care to newborns, infants, and young children in a low resource setting.

Conclusion
Experience of care is an integral component of quality care for hospitalized newborns and young children up to 24 months of age. There is limited evidence on the implementation of models of care that sufficiently consider provider-centric norms and attitudes while involving parents and families in the care of hospitalized newborns and young children globally, and in sub-Saharan Africa. A focus on addressing norms and values of health providers that may drive poor quality of care is critical. Improving provider performance is crucial to accelerating progress in child survival-and to thrive-and meeting the sustainable development goal targets.  Table. (TIF)